Tag Archives: health

Yesterday saw the death from Covid-19 of someone I know well and the seriousness of the situation really hit home. When you live in a rural area you feel a bit immune to stuff that goes on in cities, but this virus cares not for age, location, sex, ethnicity nor anything else.

The person who died was one of the women who treated me badly at my last camera club, so I have mixed feelings about her passing. She put me through hell last year when I had done absolutely nothing to deserve it and despite her knowing how difficult my life already was, so I’m not going to be a hypocrite and say I’m deeply affected. On the other hand, her partner also died who was lovely and I genuinely feel for their families and friends as they can’t have normal funerals where they celebrate the lives of their loved ones and receive support from each other. I simply can’t imagine losing my Mum or Dad and not having a funeral. It’s a huge part of the grieving process and I think will have repercussions for those left behind. I know at least one of my lovely readers is also currently in this position and my heart goes out to her.

Having just heard the news yesterday, I totally lost my shit with my neighbour up the drive. As regular readers will know, I am currently pursuing legal action against him as he has to travel over the private driveway to my home to access his upholstery business and for the past 4 years has let delivery vans, staff and customers park on my drive to load/offload which blocks me in my garage.

On Sunday, our Government here in the UK announced a total lockdown. You should only be going in to work if you are classed as “essential”, though can work from home if needed. So what did I find on Tuesday? My neighbour working as usual and a customer, who had come to pick up furniture, blocking me in my drive. Livid doesn’t even begin to describe my reaction.

I am classed as being in the vulnerable group as I am chronically ill, and my 80 yr old neighbours who live only 6ft away from the workshop, are also in total lockdown. The very last thing we need are people tooing and froing up the drive to our homes, especially as my elderly neighbours have no garden or outdoor space so tend hundreds of pot plants in the driveway and were out doing just that all day in the sunshine to pass the time. So I sent a very stern email to shit-for-brains telling him to fuck off home. If he wants to put himself at risk by continuing to work and have customers visiting he can do it at his own house, but not ours. FFS.

I continue to have mixed feelings about the general public’s reaction to the pandemic. They are all freaking out at how they will manage financially with no money coming in. Welcome to our world. When I first became ill with M.E. and had to stop working I lived alone and had a massive mortgage which I could only pay by taking in lodgers even when I was working. So despite being bedridden and at times critically ill, I still had to share my home with a succession of total strangers for 10 years so I didn’t end up losing my home.

People are already going stir crazy with boredom and it’s only been a week. Trying lying on your own, sick in bed, with no internet, mobile phone, TV, radio or books for 23 hours a day for the next 6 years then tell me what stir crazy feels like. Seriously people, get a grip.

I have friends who have been bedridden and lived in almost total isolation for over 2 decades. It is not headline news. Welfare benefits for the sick and disabled continue to be disallowed, or reduced to the point where no-one can possibly survive on them. Social care is down to 15 minutes twice a day – you can’t possibly make a fresh meal in that time. Yet the healthy population haven’t given a flying fuck and, once this pandemic is over and their lives return to normal, they will continue not giving a flying fuck.

So I’m afraid my sympathy for healthy people living for a couple of months without their usual income and in isolation (though for the most part with family) and with little health or social care isn’t particularly high. They are getting a taste of what life is like for millions of chronically ill and elderly people, but at least their life will resume by the end of the summer, unlike ours.

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I have conflicting emotions surrounding the outbreak of Coronavirus. On the one hand, I totally understand the seriousness of a novel virus with rapid transmission which can kill people with pre-existing health conditions, and on the other hand I want to scream that isolation, infection risk and vulnerability are situations already encountered by chronically ill people the world over and few have given a shit for a very, very long time.

I was bedridden with M.E. for a decade. I lived alone and lay in my bed, seeing and speaking to no-one, for 23 hours and 50 minutes of every single day. There was no internet, Skype, mobile phones or Whats App in those days and I could only speak for a few minutes on the phone before being totally wiped out. Not that anyone rang me, as my boyfriend and friends all fucked off. The only people I ever saw were my parents, who both worked full time and popped in with my dinner each night, and my cleaner who I paid to visit for 3 hours each Wednesday (if I hadn’t paid her she wouldn’t have been there). I maybe saw my GP twice a year if I begged her to call round, but other than that I lived in complete isolation. Did anyone give a flying fuck? That would be a big, fat no.

I dreaded going out for any reason. Not only did it make me feel so ill I prayed to die to escape the torture, but I also risked picking up any number of community infections – anything from norovirus to the common cold. And, of course, because my immune system was all to pot, if a virus came within 30 feet of me you could guarantee I would succumb to it. Healthy people suffer for a few days and then are back to normal, but if you have a compromised immune system all hell can break loose and it can have very serious consequences. I wish more people realized this. I went to my Camera club on Wednesday night and a woman sat next to me who was absolutely stinking with cold. She hacked, coughed and sneezed the entire time while I did my best not to breathe in her germs. Why the HELL was she there, spreading her infection to all in sundry?! Well, she didn’t have Coronavirus so apparently it’s fine to infect everyone with her lergie! Jaysus.

If I get her cold it means I then can’t visit my parents, despite the fact I am their main carer. My Mum, who has severe heart & lung disease, caught a cold mid December and has spent the last 3 months struggling to breathe. Last week she was on her 4th lot of antibiotics and her 4th lot of steroids, despite also using a daily steroid inhaler for her COPD. She looks dreadful and has lost loads of weight because the antibiotics make her feel sick to the pit of her stomach and give her the runs. Healthy people are incredibly selfish to go out into the community when they are obviously infectious and have no thought to the risk they pose to others less fortunate than themselves. All the advice over Coronavirus isn’t getting this message home if the situation with the woman at my camera club is anything to go by.

As a kid, I contracted Chicken Pox despite having been immunized. I was also the only girl in a 1300 pupil school to contract Scarlet Fever, and in my teens I also contracted Glandular Fever (Epstein Barr). I initially developed M.E. following a tummy bug I caught while working on a luxury cruise liner. I then developed severe M.E. after contracting viral meningitis while in a 5 star holiday resort in Kenya. My Mum had a heart attack in 2016 and on my first visit to her in hospital I contracted Norovirus. My immune system clearly doesn’t work as well as other people’s and doesn’t respond as it should when it comes into contact with viruses. Yet I look completely healthy!

Community born infections kill vulnerable people all the time yet it doesn’t make the headlines. 28,330 died of the flu in 2014/15 in the UK alone, let alone the figures from the rest of the world. Coronavirus doesn’t seem to affect children much, even if they get it, nor healthy young adults. You are more vulnerable to serious complications the older you are, or if you have pre-existing health issues, but that applies to any community born infection.

I’m not saying that Coronavirus isn’t serious, simply that any community born infection can be fatal for the vulnerable – it’s nothing new. And if you have to self isolate for a week or two quit whining and spare a thought for those people who have been isolated by chronic illness for years and who receive none of the attention being given to those affected by the current situation. STAY AT HOME if you are infectious with anything.

I get quite a bit of flack on my blog for dismissing currently popular theories on what causes or cures diseases, in particular that certain foods make us sick or that we can eat ourselves well. Food, and the effect it has on our body, just isn’t that simple. For example, we were told for years that saturated fat was bad for us, and then along came coconut oil which despite being a saturated fat actually lowers bad cholesterol and raises good, blowing the saturated fat theory out of the water. And as I’ve mentioned before on my blog, my parents eat an almost identical diet yet my Mum’s cholesterol is high and my Dad’s is low so there’s obviously more at play than simply what they’re putting in their mouths.

When I developed M.E. I was working on a luxury cruise liner and as an officer I ate in the passenger dining room. Breakfast was a smorgasboard of wonderful fresh fruits and my evening meal was fit for a king though I opted for salads much of the time as I didn’t want to gain too much weight. I’m pesco-vegetarian and have never been a big drinker. In addition I was a regular at the on-board gym and spent many of my evenings dancing the night away. I lived as “healthily” as it is possible to do yet I still got sick. My booze guzzling, overweight, smoking, “unhealthy” colleagues did not. How freakin’ unfair is that?!

My Mum has smoked since the age of 14 and hasn’t exercised for as long as I’ve been alive. As a consequence her lungs are fucked, she has had a heart attack and her kidneys are packing up. But despite being an alcoholic for the past 6 years and doing nothing to help her situation, she is nearly 80 and the tumour the doctors found on her lung turned out to be benign. Her sister, on the other hand, never smoked, didn’t drink, walked everywhere as she couldn’t drive and cooked every single thing she ever ate from scratch yet she died from cancer at the age of 78.

My cousin, the eldest daughter of said Aunt, is 60. She met her husband when she was a teenager and they have been blissfully married for 40 years. Neither smoke, rarely drink, are slim, walk daily in the beautiful clean air we have here in the Lake District, her husband is a regular at the gym and my cousin used to teach home economics so is an accomplished cook and like her Mum has always made every item of food from scratch. They own a second home in the South of France so took early retirement in their fifties and now spend 6 months of the year relaxing by the pool in the sunshine. You couldn’t find a couple of who live a happier, healthier lifestyle yet both have cancer. My cousin breast cancer and her husband chronic leukaemia.

In addition, my cousin has zero Vitamin D levels. How can a person who spends 6 months of every year lying in the mediterranean sun have absolutely no vitamin D when current guidelines tell us that spending just 15-30 minutes each day outside will give us all the Vitamin D we need? It’s clearly not quite that simple. Disease, in general, isn’t quite that simple.

My Step-Dad’s Mum moved into sheltered housing at the age of 56, after which she didn’t exercise a day in her life. She weighed 20 stone (300lbs) and had diabetes, yet despite having a regular blood glucose level of 16 (should be under 7) she didn’t really have any problems and ate whatever the hell she liked. She lived until she was 103. 103! And only entered a care home when she was 99.

Much is spoken these days about genes and genetic susceptibility to disease but it’s a very complex area. I came up negative for the genes associated with Dupytrens Contracture, for example, yet already have a Dupytrens nodule in the palm of my left hand. DC affects 4 times as many men as women, yet I am female. When it does affect females it tends to be mild, yet my Mum has severe DC in both hands and has already had three unsuccessful surgeries. It usually affects the right hand, yet I have it in my left. So in my case everything I read about DC has turned out to not apply.

My Mum has Ehlers-Danlos, yet has never had the pain or dislocations from which I suffer. I’d also bet my house on the fact my Brother has the EDS gene yet has never had a single symptom. If we all have the same genetic disease why is one person crippled with it and another not (and why does the crippled person have to always be me?!).

If exercise staves off Dementia why does my Dad, who until 4 months ago walked the fells every week and who has the blood pressure and cholesterol of a 21 year old, have it? If eating broccoli staves off Dementia my Dad should never have developed it – he loves the stuff. If keeping your brain active staves off Dementia why hasn’t it helped my Dad, who regularly does the crossword, has the best long-term memory of anyone I’ve ever met and can work out the maths of a dart board before I’ve even turned my calculator on? My Mum, of course, has slobbed infront of the telly for the past 15 years smoking and drinking yet her brain is still as sharp as a tack.

As far as I can see we are fairly much clueless as to what causes disease. We don’t even know why if you put 3 people in a room with the cold virus 1 won’t develop a cold, 1 will catch the cold and 1 will get pneumonia. If drinking to excess, smoking and not exercising kills you my Mum should have been dead twenty years ago and her sister should have lived another thirty. Smoking destroys collagen so you would think that my Mum’s EDS would be much worse than mine as a non-smoker, yet the opposite is true.

If I were healthy I swear I would just live however the hell I liked. I would drink and eat whatever I fancied. I would exercise if I wanted to and not if I didn’t. It appears to me that health, for the most part, is as much a game of Russian Roulette as anything we do or don’t do. Life is too short to live it denying ourselves pleasure or doing stuff because we think we should, not because we enjoy it (does anyone really enjoying spinning classes or doing 30 crunchies before breakfast?!). Now where did I put the humongous box of Wine Gums Santa so kindly left under my tree……….

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I’ve lived in both a city (Wolverhampton), a market town and a rural village and there is no doubt about it – people who live in the countryside are discriminated against on every level.

A good friend of mine lives in London. There are no less than 3 hospitals within a one mile radius of his house. I live in Cumbria and my nearest hospital is 30 miles away. If you need more specialist services, like treatment for childhood cancers, female cancers, heart, lung or spinal surgery, or allergies my nearest hospital is 90 miles away. There is no public transport in my village and it is impossible to survive without a car. If I wanted to visit my local hospital via public transport, I’d first have to pay £15 for a taxi to my local town, then catch the train to the city then hail another taxi to the hospital……and back again, which would literally take all day. When you’re really poorly the effort of making the journey to a hospital makes you feel more ill than the ailment from which you suffer and one of the reasons I barely ever saw a Doctor during my ten bedridden M.E. years – I was simply too sick to get there.

Can you even imagine what would happen if Great Ormond Street, the Royal London and Guys all moved to Cheltenham or Ipswich and it took Londoners a taxi ride, changing trains 3 times and another taxi ride to get there with a sick child, a cancer patient or a frail elderly parent? It’s unthinkable, yet rural people are expected to just get on with it and not make a fuss.

If you’re unlucky enough to be admitted to hospital as an emergency, and go in an ambulance, you have absolutely no way of getting home again. My neighbours, both in their seventies, recently had this experience and were discharged from A&E at 3am, in their pyjamas. They then had to hail a taxi to bring them the 30 miles home which cost them nearly £80.

When my Mum had her lung surgery over in Newcastle my Dad and I visited her for ten days. That’s a 180 mile drive every single day, the cost of a full tank of petrol and an £8 parking fee not to mention meals. It cost a small sodding fortune and I have no idea how anyone on a low income manages (my Dad paid for everything because I couldn’t afford to). After discharge she then spent 2 weeks in our local hospital, where we visited every day. A 60 mile round trip, petrol, meals and parking fee.

Following having half her lung removed, if we’d lived in the city my Mum would have been offered a 7 week rehabilitation programme with a team of specialist lung nurses and physios to get her up and moving again. Only she lives 20 miles up the road in a town where no such programme exists so she was just left to get on with it.

As a Carer now for my parents I visit them 4 days a week. This journey alone costs me £80 a month in petrol, which is a huge chunk out of my small income, not to mention the cost of buying, insuring, MOTing, servicing and maintaining a car.

There are 2 specialist centres for people with Ehlers-Danlos syndrome in England. One is in London, 300 miles away from where I live. The other is in Sheffield, 124 miles away which takes nearly 2½ hours in a car (there is no direct train). It’s not do-able when you’re as ill as I am, especially if you need to go regularly and not merely as a one-off appointment.

I received an email from one of the EDS charities this week offering for me to attend an event “near you”. Great, I’d love to! Only it was in Leeds, 100 miles south. Birmingham is 100 miles north of London but no-one would ever suggest that Birmingham is “near” London FFS! The Lodon-centric attitude in this country drives me nuts – it’s as if nowhere else exists. None of the conferences are ever held north of Birmingham, when they should actually be held in either Carlisle or Newcastle – at least that is the middle of the UK and would enable people from Scotland to attend. But of course it’s a long journey to make from London, and the trains to get from London to Newcastle are dire, so no-one ever bothers. Who cares what happens in “the north”? It’s not like any of us matter.

I rely totally on the internet – it is my lifeline to the outside world. It’s how I order repeat prescriptions, book doctors appointments, do all my banking, pay bills, do my grocery shopping and all other shopping. Yet until last year my broadband connection speed was 6mbps and regularly cut out. My mobile signal is no better and I can’t make a call at all from downstairs and only get 2 bars signal at most upstairs. Which means not only do I have to pay for a mobile contract every month I have to keep paying for a landline contract every month too which doubles the cost of my broadband and phone bill. My one luxury is having Sky tv who offer free broadband and phone services for their customers…….unless you live in the country where it isn’t “cost efficient”, so we have to pay an extra £20 a month for broadband whereas if I lived 7 miles away in town I’d get it for nothing.

Our nearest Hospice is a 60 mile round trip away. Can you imagine being in your 80s or 90s and wanting to visit your dying spouse every day? How would you get there if you can no longer drive? And even if you could drive, how would you afford the petrol if you lived on the state pension?

The discrimination doesn’t stop even when you die, because guess where our Crematorium is? That’s right, a 60 mile round trip away. So you have the Church service locally, then everyone has to drive 30 miles to the city for the cremation, then you all have to traipse the 30 miles back again to have the ashes interred in the cemetery. It’s outrageous to put grieving families through that and doesn’t half bump up the cost of a funeral because rather than hiring the funeral director’s staff and cars for an hour or two you’re basically looking at the whole day.

There’s a myth that everything costs less in “the north” and it’s the biggest fib ever told. In some parts of “the north” houses might go for a pittance just like they do in some parts of the south, but here in the Lake District an average 3 bed house costs anywhere from £300,00-£450,00 which is 19 times the average local wage. We hear all sorts on the news about the extortionate cost of housing for Londoners, yet nothing about the equally out-of-reach cost of houses in Cumbria. A loaf of bread and a pint of milk costs the same in Tesco in Carlisle as it does in Tescos in Maidstone, yet the average salary in Carlisle is £18,000 while the average salary in Maidstone is £25,000 – guess who’s going to be worse off?

Maybe all us country folk should just move to the city. Only of course then there would be no clean drinking water, cities not being known for their reservoirs. No-one to grow our food, not that that’s going to be important after we leave the European Union. No-one to milk our cows. No-one to sheer our sheep for their wool. No B&Bs or hotels to book into for our holidays. No electricity because there would be no-one manning nuclear power stations whicharen’t located in cities (who cares that rural children get leukaemia from the waste they produce). No-where to film Downton Abbey. No-one taking care of our beautiful green spaces or ensuring our wildlife doesn’t die out. No-where for our military or our pilots to train. No-where to go snow boarding, fell walking, horse back riding, canoeing or the 1001 other outdoorsy activities that some folks like to do. No-where to study our night skies. No-where to go to avoid the pollution so rife in our city air. No-where to go to escape the hustle and bustle and to just sit in peaceful solitude. Not to mention the fact we’d lose 20 million overseas visitors a year which would wreck the entire country’s economy. On the plus side, at least there would be no tourists trying to climb Blencathra in their trainers and flipflops and no need for our mountain rescue team risking their lives to save them. Bonus.

Of course it’s not feasible to have a hospital in sparsely populated rural areas, however there absolutely should be recognition of the fact that rural people are economically disadvantaged in accessing health care. We should have free parking at hospitals and either quick, reliable hospital transport or vouchers towards the cost of petrol, train or taxi fees for both patients and their main carer. If we have to travel out of the county there should also be vouchers for free b&b accommodation.

There needs to be a concerted effort to make health education available to all. It’s impossible to take time out from the busy working life of a Consultant to attend a medical conference 300 miles away, just as it’s impossible for sick patients to travel halfway across the country to attend patient events, so much more needs to be done to hold conferences away from London and Birmingham and to ensure that venues are accessible by major train links.

Just because we live outside of cities shouldn’t mean that we receive both poor health education and poor health care. We pay our National Insurance stamp and taxes just like everyone else, yet seem to get very little in return.

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Welcome!

Hi. Thanks for visiting my Blog. Posts are listed newest first, but if you’d like to start with my first rambling written in 2013 click here. I’m not a mast cell or EDS expert and have no medical training. I’m just sharing my own personal thoughts and journey. This isn’t a forum, more a diary, but polite, respectful comments & questions are welcome – click the ‘leave a reply’ link under post titles or scroll to the end of each post and use the comments box.

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